Herceptin Treatment Questions

[saleboat]

Hello--

I'm wondering if some of the seasoned pros can point me in the right direction:

1) Re: the efficacy of hormonal treatment for HER2+ patients. I just started Taxol & Herceptin and wondering if this is something I should bring up with my Onc. I was surprised when I read that hormonals may not be as helpful to HER2+; hadn't heard that before. Someone on the boards mentioned a recent article on this subject posted by Edith (?) but I can't seem to find it. If someone has the link handy, I'd appreciate it.

2) I know that Herceptin is promising, but not a silver bullet. I had read that those with a Pi3K inhibitor are less likely to respond to Herceptin-- is that a routine test? I'd like to get tested if possible. Although my Onc seemed dismissive when I asked her about the inhibitor.

3) Re: vaccine trials. This seems promising. Is this something that can be done while still receiving Herceptin? Not sure of the timing of this.

Thanks in advance of any thoughts on the above.

Jen

[eric]

Jen,

In response to #3...there are several vaccines available in conjunction with herceptin. We live in NJ and my wife now goes to the University of Washington in Seattle after considering Walter Reed in PA as well. Pleasse let me know if you need the contact info.

Eric

[Gina]

Jen, --First, welcome to the site. As far as "seasoned pro's" go, I guess I will have to do...smile. BC since '97/Herceptin alone since '99.

Question #1 regarding "the efficacy of hormonal treatment for HER2+ patients." Like so many other things in this field which STILL really is more of an "fine art" than a "true science"-- the answer is, "it ALL DEPENDS"...smile. As you read through these boards, you will often see those of us who post mention that we are ER/PR negative or positive and Her-2 (1+,2+, or 3+) and give other notations such as "mets since '99" or Stage 3B, etc. So in order to better answer this question for you personally, we need to know what you are? For example, I am PR/ER Negative and Her-2 3+. In my case, Tamoxifen and some of the newer more exciting hormonal treatments are of absolutely NO BENEFIT whatsoever to me, personally. However, if you are either ER positive (estrogen receptor) or PR positive (progesterone positve) or both (ER+/PR+) and have some measure of her-2, hormonal treatments in conjunction with herceptin could indeed be efficacious for YOU. What makes the "her-2" DX more scary is that before Herceptin, these tumors were VERY AGRESSIVE and a primary DX with Her-2 involvement many times eventually progressed to STAGE IV mets unbelievably quickly, and then, sadly in many cases, the end result was death. The ER/PR negative her-2 tumors (hormonal negative) were especially frightening as before Herceptin, there was not a whole lot that the oncology community could throw at these highly aggressive, deadly tumors, since the hormonals were not working. Fortunately, the invention of Herceptin by Dr. Dennis Slamon has changed all that. Now, even women like me, who before had a truly dismal prognosis, can lead almost normal lives, although we remain tetthered to Herceptin, dragging our weekly, bi-weekly, tri-weekly or creative dosing infusions behind us...smile. Sometimes having her-2 makes me feel like an astronaut exploring a new planet, or a deep-sea diver, exploring the uncharted reaches of the ocean's floor, both--dragging our oxygen behind us...smile.

Now, as for the Pi3K test, I always advise anybody with this disease to find out AS MUCH ABOUT the specifics of the kind they have as possible, so keep pushing for the test, but do not be dismayed if you never get access to it for now. Also, keep in mind, just from what I have been reading, that it may not really be so black and white, AKA that if you do "have the inhibitor you "won't respond" --NONSENSE, given the incredible track record Herceptin has left in its wake, all other things being equal, for Pete's sake GIVE IT A GO!!! if you have her-2. I also read that diet MAY be able to influence these inhibitors --literally turning them on and off at will, so you see, even if you test that you have the inhibitor one time, it is NO GUARANTEE that you will always have it in the "on" position, every time. Proteomics is a VERY complex new science and the inner -workings of each INDIVIDUAL cell even moreso, and it does not simplify matters that we have trillions of them all talking at the same time...sigh...smile.

As to your 3rd question about the vaccine trials, I will defer to Eric, Michelle and others who have direct experience with them as I am following a different protocol, but a lot of folks on this site are on the cutting edge with these vaccines and it will be interesting to see how they play out. Overall, as sad as we all are that your are newly DX, I think most of us would agree that you literally couldn't be coming into this area at a better, more exciting time as far as advancement in research is concerned. Best of luck to you, Gina GPOPP@Comcast.net

[saleboat]

Dear Gina--

Many many thanks for your thoughtful reply-- I really appreciate the time you took. I am in the midst of treatment-- 4 A/C, 4 T (all dose dense) with Herceptin concurrant with the T and then on for a year. Which I guess is standard, except for the fact that I'm totally dose dense (and getting denser by the minute...ha!).

I'm 35 y.o. and Stage IIIc, ER+, PR+ & HER2+++. I'm handling the treatments okay so far, still working and keeping life pretty much as normal. I get a lot of inspiration from these boards, and all of you who are so wonderful to share your wisdom, however painfully garnered. I sure wish we could have joined another club!

Jen

[Gina]

Hi, Jen,

So, smile...tell me, how did you end up with such a FULL HOUSE??? I mean ER+/PR+ AND HER 2+++, smile if I am reading you right??? Gee, maybe you should go to Las Vegas and play the slots...what are the odds???...and my goodness you are only 35 years old...sigh...

I was 33 stage IIIb or c at first then Stage IV for years, but GUESS WHAT?? I am 41 now...smile..at the time I was Dx, no one would have taken the bet that I would blow out 40 candles on my cake, but I did...then 41, even and so far so good. Yes, I would have loved to have met you under more "FUN" circumstances. Unfortunately, the ER+ and PR+ categories are out of my league, but as you know, I have a great body of knowledge regarding the her-2 +++. No matter what else you do, INSIST ON GETTTING THE HERCEPTIN. Try to find out what ALL your serial tumor markers are. If you can find out and are willing to share them with me, I will give my take on them, for the little it is worth...I am NOT an onc. There are some new hormonal drugs out there that you take after Tamoxifen?? others know better than I...so keep the faith.

I will talk with you more when you are feeling a bit better, but just for kicks, some of us on another page are playing around with blood groups and the Rh negative factor...By chance are you Bloodgroup A and if so, are you A positive??? Just curious. I am A negative, and have been seeing a small niche of her-2 +++ who are A negative or O-, B-, or AB-? A+ is also common in Breast cancer...Will explain more later.

To increase your energy, try some of my whacky diet, exercise and supplement tips noted in some of my other postings...

Best wishes to you,

Gina